Parental Interest in Genomic Sequencing of Newborns: Enrollment Experience from the BabySeq Project
| Autor: | Casie A. Genetti, Talia S. Schwartz, Jill O. Robinson, Grace E. VanNoy, Devan Petersen, Stacey Pereira, Shawn Fayer, Hayley A. Peoples, Pankaj B. Agrawal, Wendi N. Betting, Ingrid A. Holm, Amy L. McGuire, Susan E. Waisbren, Timothy W. Yu, Robert C. Green, Alan H. Beggs, Richard B. Parad, Ozge Ceyhan-Birsoy, Kurt D. Christensen, Dmitry Dukhovny, Leslie A. Frankel, Chet Graham, Amanda M. Gutierrez, Maegan Harden, Joel B. Krier, Matthew S. Lebo, Harvey L. Levy, Xingquan Lu, Kalotina Machini, Jaclyn B. Murry, Medha Naik, Tiffany T. Nguyen, Uma Ramamurthy, Vivek Ramanathan, Heidi L. Rehm, Amy Roberts, Serguei Roumiantsev, Tina K. Truong |
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| Jazyk: | angličtina |
| Rok vydání: | 2018 |
| Předmět: |
0301 basic medicine
Adult Male Parents medicine.medical_specialty Parental Concerns media_common.quotation_subject Genetic counseling Consent for Genomic Testing 030105 genetics & heredity Article law.invention 03 medical and health sciences 0302 clinical medicine Neonatal Screening Randomized controlled trial law Informed consent 030225 pediatrics medicine Humans Genetic Testing Predictive testing Insurability Genetics (clinical) media_common Genetic testing Newborn screening Genomic Sequencing Informed Consent medicine.diagnostic_test business.industry Patient Selection Infant Newborn Sequence Analysis DNA Newborn 3. Good health Feeling Family medicine Female business Attitude to Health Newborn Screening |
| Zdroj: | Genetics in medicine : official journal of the American College of Medical Genetics |
| ISSN: | 1530-0366 1098-3600 |
| Popis: | Purpose: Newborn genomic sequencing (nGS) has great potential to improve pediatric care. Parental interest and concerns about genomics are relatively unexplored. Understanding why parents decline research consent for nGS may reveal implementation barriers. Methods: We evaluated parental interest in a randomized trial of nGS in well-baby and ICU nursery settings. Interested families attended an informational enrollment session (ES) with a genetic counselor prior to consenting. Reason(s) for declining participation and sociodemographic associations were analyzed. Results: Of 3,860 eligible approached families, 10% attended ES, 67% of whom enrolled. Of 1,760 families queried for decline reasons, 58% were uninterested in research. Among 499 families considering research, principal reasons for decline prior to ES included burdensome study logistics (48%), feeling overwhelmed postpartum (17%), and lack of interest/discomfort with genetic testing (17%). Decliners after ES more often cited concerns about privacy/insurability (41%) and uncertain/unfavorable results (23%). Conclusions: Low interest in research and study logistics were major initial barriers to postpartum enrollment and are likely generic to many postpartum research efforts. Concerns over privacy and result implications were most commonly cited in decliners after ES. Understanding parental concerns around research nGS may inform future integration of nGS into newborn screening, predictive testing, and pediatric diagnostics. |
| Databáze: | OpenAIRE |
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